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Telethon

Julie Rhoad, mom of two boys with muscular dystrophy, speaks from her heart to the 2008 Telethon audience about the tough challenges faced by MDA families. Host Jerry Lewis offers emotional support.

Labor Day weekend will always be special for MDA. Our families’ compelling stories give us strength and we’ll continue to share those inspirational stories on Labor Day and throughout the year via digital channels as part of our year-round consumer engagement.

Through the innovation of the telethon, MDA became the leading organization supporting kids and adults with muscular dystrophy, ALS and other life-threatening neuromuscular diseases.

The innovation and fight continues. With the telethon’s rich history coming to a close, MDA will continue to honor families by:

redoubling and refocusing our research investments;

introducing more clinical trials through partnerships with medical institutions and drug developers;

improving the quality of care, services and therapies for families;

and opening new channels to connect with kids and adults who need our assistance and support.

MDA’s mission is life-changing. Steadfast and malleable, it reminds us to never forget where we have come from – we were started by families, for families – as we meet the evolving needs and opportunities of the day.

At MDA, we have never taken life’s most basic abilities for granted because the kids, adults and families we serve cannot. I’m referring to everyday activities – the ability to walk, to laugh, to dress and feed yourself, to hug and even to breathe. We fight every moment of every day to protect and enable these precious freedoms.

Our big picture perspective on muscular dystrophy, ALS and other diseases that not only limit muscle strength and mobility, but which threaten lives, has allowed us to lead, change and create memorable milestones and moments over many years. Two distinctly American cultural phenomena – volunteerism and philanthropy – have been hallmarks of our quest.

Six decades ago, seeking a way to introduce this powerful and important mission to a nation, MDA leaders embraced a novel approach…and the MDA telethon was born. This big idea captured the hearts of Americans in hometowns across the nation. Using then relatively new devices – the television and telephone – and a cadre of generous celebrities, none more important than the irrepressible Jerry Lewis, we brought our mission to the masses. And more importantly, we brought our families’ remarkable stories of strength into the hearts and homes of our neighbors.

Today, we reflect on this remarkable history and our mission as we again change and move forward. Specifically, we have announced we no longer will produce and broadcast the MDA Labor Day weekend telethon, our Show of Strength. And while many people may not know the telethon or have watched it in recent years, we want our longtime, loyal telethon supporters to know this is a decision we do not take lightly.

In its heyday, the MDA telethon sparked an era of giving and volunteerism across America inspired by courageous MDA families who became household heroes. Compassion flowed. Celebrities brought star power. Firefighters, mail carriers and fraternal groups said "yes" to an invitation to partner. Corporations and their customers got engaged. Parents used the telethon to help teach their kids the importance of giving back.

While televisions and telephones are still in play today to engage supporters, cost-effective digital media are now the preferred channels of choice. A handful of TV stations during the early telethon years paved the way for the hundreds of public and cable TV networks and the personalized viewing we experience today. Websites, apps, interactive social media, streaming video and user-generated content hosted on an array of devices – computers, smart phones, tablets and intelligent watches –have reshaped society, including the fundraising landscape for successful nonprofits.

For many years MDA has been diversifying our engagement strategies beyond the telethon to respond to these changes and the preferences of our supporters. Today, for example, we partner with retailers whose consumers donate at checkout counters and use electronic shopping carts….firefighters who use their boots to collect donations on street corners also prompt support via Facebook pages…. and amateur athletes who run in endurance races and solicit charitable giving via personalized, home-grown Web pages.

Of course, Labor Day weekend always will be special for MDA. Our families’ compelling stories give us strength. And we’ll continue to share those inspirational stories on Labor Day and throughout the year via digital channels as part of our year-round consumer engagement.

During the past two years I’ve served at MDA, I’ve had ongoing contact with Jerry Lewis, whose last MDA telethon was in 2010. He’s 89 and agelessly vibrant. It’s not possible to put our gratitude for Jerry into words. However, I believe the best way to say thank you and honor his legacy is to underscore our commitment to “his” kids, plus the adults and families we serve. He implores us to keep fighting for them and the loved ones we’ve lost. We are and we will.

Importantly, because of Jerry’s leadership and past MDA investments, the muscular dystrophy and ALS disease landscapes are transforming. More new drugs and therapies are expected in the next five years than in the prior five decades. For Duchenne muscular dystrophy, for example, 120 clinical trials are underway or have been completed compared to just five a decade ago. Progress for our families can’t come soon enough.

So while we transition from the telethon, we will never depart from our life-changing work helping kids and adults from day one and by assisting families in hometowns across America. The infectious, familial, can-do spirit in our volunteers, families, staff and supporters inspires us to do more together. The same spirit of innovation that got the show started drives us today. Our imperative is to connect in fresh and meaningful ways with our current supporters and a new generation to help propel new discoveries.

As we make this transition, please know we are deeply grateful for your past support and leadership. And we humbly request your help in our ongoing fight to free kids and adults from the harm of debilitating muscle diseases – and someday free them of the diseases themselves.

The MDA telethon brought our mission to the masses and our families’ remarkable stories into the hearts and homes of our neighbors. It changed philanthropy as we know it and, more importantly, has been the foundation for the promising progress we see today based on our urgent pursuit of treatments and cures for MDA families.

Over the years, countless megastars have appeared on the telethon to help families affected by muscular dystrophy. Alongside the great entertainment, some of the most riveting telethon moments have come from unsung heroes, our families and ambassadors, taking the stage.